children with special needs - - the official website
TRANSCRIPT
Children with Special Needs Internet Guide for Parents and
Professionals
Delaware Health & Social Services
Birth to Three Early Intervention System
2003 - 2004
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This guide was produced to help parents and professionals seeking information about children with special needs gain access to the various web sites that may address needs or questions they have. The Internet is a source of information that may or may not contain valid information. Information derived from these sites does not necessarily reflect the opinions or practices of anyone involved with the Birth to Three Early Intervention System. This guide serves as a resource only, not as an endorsement or validation for the information provided by the site. Information provided by the sites should not be construed as medical advice. Please consult your health care professional before making any decisions regarding your child’s health care needs.
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Basic Internet Directions: ♦ When you begin a search on the Internet, there are many search engines that can be
used to search for a topic of choice. A search engine is a webpage database that gives an option to search for various topics. Each differs in the way the results of the search are displayed. Any search engine may be used depending upon the personal preference of the searcher, and you may find different sites located in each engine. You may also find that the search results of one day may be different then a previous day due to the many changes that occur on the Internet from day to day.
♦ Below are listings of search engines and websites that may be useful to you as you begin your search. The way that these engines and sites can be found is to do the following:
1. When you begin use of the Internet, you will be on a main page that will be a search engine of its own. It could be any one, dependent on the server that that is used. For example, this could be America on-line, Netscape, AT&T, etc.
2. If you want to search from this screen, simply go to the search box and enter the keywords of the topic of interest. Results will be displayed and you will be able to choose the topic or site of your choice. You will be able to return to that search site from the new site that you go to by clicking on the back square at the top of the screen.
3. If this search engine is not what you want to use, find the long box at the top of the screen where the word 'address' is located. From here click once on the website address, for example http://www.yahoo.com. Doing this will turn it blue in color and then by hitting backspace it will be erased. A double click on this will allow you to have a cursor in the address box and from there you can blackout any part of it you wish.
4. When it is blank, you may enter a new address that should always start with: http:// Sometimes you will need the www after this, and other times it is not needed (it should be entered if it is written that way on this sheet).
5. When you are finished typing in the entire address, press ‘enter’ and the computer will search for the website of your request.
6. If an error message is given, check the address and re-enter. Sometimes the server for the site is down and it may be advisable to try again another time.
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Below are the addresses for some search engines and websites that may be helpful to you. Good Luck and enjoy surfing the Web. Search Engines Alta Vista www.altavista.com Amazon www.amazon.com Excite www.excite.com Go www.go.com Google www.google.com Ifind www.ifind.com Lycos www.lycos.com Meta Crawler www.Metacrawler.com Savvy Search www.search.com Snap www.snap.com Web Crawler www.webcrawler.com Yahoo www.yahoo.com Medline Search (Medical search engines) Health Gate Medline Access http://www.healthgate.com/ Health World Medline Access http://www.healthy.net/library/search/medline.htm MedScape www.medscape.com/ Web.MD www.webmd.com
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Table of Contents
Delaware Health & Social Services 1
Table of Contents 5
Government 8
Laws concerning Disability 9
Financial Issues 9
Early Intervention/Early Childhood 9
Transition 10
Advocacy 11
Parent & Family: Information and Support 12
Sibling Relationships 13
Technology 13
Adaptive Toys 14
Adaptive Clothing 14
Adaptive Equipment 15
Activities 15
Entertainment 15
National Disability Organizations 16-18
General Disability Sites 18-19
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Specific Disability Sites
ADD/ADHD 19
Autism 20-21
Asperger’s Syndrome 21
Bone Disorders 22
Brain Injury 22
Cerebral Palsy 23
Cleft Lip & Palate 23
Cystic Fibrosis 24
Deaf/Blind 24-25
Down Syndrome 25-26
Dwarfism 26
Fetal Alcohol Syndrome 27
Fragile X 27
Genetic Disorders and Birth Defects 27
Hearing Impairments 28
Hydrocephalus & Spina Bifida 29
Hyperlexia 29
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Juvenile Diabetes 29
Language/Speech Disorders 30-31
Learning Disabilities 31-32
Leukodystrophy 32
Lowe Syndrome 32
Mental Retardation 32
Muscular Dystrophy 32-33
Paralysis and Spinal Cord Injury 33
Prader-Willi Syndrome 33
Rare Disorders 34
Rett Syndrome 34
Seizure Disorders 34-35
Spinal Muscular Atrophy 35
Tourette Syndrome 35
Tuberous Sclerosis 36
Vision Impairments 36-37
Williams Syndrome 37
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Government Federal Register - U.S. Department of Education Announcement
www.Ed.Gov/Legislation/FedRegister/
Provides a choice of the U.S. Department of Education documents to be viewed.
Federal World Home Page www.fedworld.gov/#hletr Provides a way to search within the government for reports and information
GPO Access www.gpoaccess.gov/databases.html
Provides a link to search different departments of government
HHS Agencies www.hhs.gov/agencies Home page for the office of Health and Human Services
IDEA Practices www.ideapractices.org Resource rich and highly interactive website that provides service providers and local administrators with information and support for IDEA-related concerns, issues, and strategies; also provides links
Social Security Online www.ssa.gov/SSA_Home.html
Provides information about social security
U.S. Dept of Education www.ed.gov Home page for the U.S. Department of Education
U.S. Federal Government Agencies
www.lib.lsu.edu/gov/fedgov. html
U.S. Federal Government agencies directory
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Laws concerning Disability Americans with Disabilities Act (ADA)
handicap.bfn.org/public/ada. html
Library directory of topics on the Americans with Disabilities Act
Fape Solutions http://fapesolutions.com/Letters/SelectLetter.asp
Provides information on the IEP, including state regulations and a resource center wih IEP links
Laws Affecting Children with Special Needs
www.lrp.com/Fed.htm Site comprised of a listing of materials and directories around issues of law available for order
National Center for Dissemination of Disability Research(NCDDR)
www.ncddr.org/index.html Provides information on research in the area of children with disabilities and collaboration between federal agencies
Office of Civil Rights – Department of Education
www.ed.gov/about/offices/list/ocr/index.html
Homepage for the Office of Civil Rights that provides information on the law, recent publications, and links to related sites
The Consortium for Citizens with Disabilities (CCD)
www.c-c-d.org Homepage that discusses the organization and provides information on recent news about disabilities
IDEA ‘97 www.ed.gov/offices/OSERS/ IDEA/index.html
Provides information on the Individuals with Disabilities Education Act
Finance Issues Center for Medicare and Medicaid Services
www.cms.hhs.gov Information on Medicare, Medicaid, and Child Health insurance
Social Security Benefits for Children with Disabilities
www.ssa.gov/SSA_Home.html
Article discussing social security benefits for children with disabilities (government publication)
The Finance Project www.financeproject.org National initiative to create knowledge and share information that will lead to the improved well-being of children, families, and communities
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Early Intervention/Early Childhood Child Development Media, Inc.
www.childdevmedia.com
Provides a listing of videos and training materials produced by leading behavior specialists, available for purchase
Division of Early Childhood
www.dec-sped.org Provides information on conference, government actions, links, and publications
Early Intervention Related Links
www.dec-sped.org/usefullinks.html
Links to sites related to Early Intervention, children with special needs and their families. Information dealing with policy, research, and services included
I.E.P www.ldonline.org/Id_indepth/iep/iep.html
Provides information about the Individualized Education Plan and what they mean to the family and child- This also discusses a lot about learning disabilities
The Hanen Early Language Program
www.hanen.org Provides information about the program concerning language delay and updates of research- Also provides links and materials available for purchase
Transition Allen, Shea, and Associates
www.allenshea.com Professional services in the area of planning, research, training, materials development, and evaluation within the field of human services emphasizing developmental disabilities
Preparing Children with Disabilities for School
kidsource.com Go to search type in “transition for children with disabilities”
Article with information on how government supports readiness, special problems faced during transition, family role, teacher’s role, elements of successful transition, transition timeline
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Advocacy ARC of the US www.thearc.org National organization of and for people
with mental retardation and related disabilities and their families; resources, publications, FAQ’s, and links
Children Now www.childrennow.org Group working to advocate for children and families. Provides information about the organization, articles, resources, newsletter, and links to other resources
Children's Defense Fund (CDF)
www.childrensdefense.org Provides valuable information about the children’s population in the U.S. and articles on several issues, also a Parent Resource Network
Family USA Foundation: The Voice for Health Care Consumers
www.familiesusa.org Provides information about the organization, publications, and child health
Family Voices www.familyvoices.org
Provides information sheets, publications, resources, and listing of their current projects; also available in Spanish
National Association of Protection and Advocacy Systems (NAPAS)
www.protectionandadvocacy. Com
Contains references to training, material, and resources of value to disability advocacy organizations
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Parent & Family: Information and Support Baby Place: The internet Parenting Resource
www.baby-place.com Provides information on pregnancy and birth, parenting, products and services, and general parent concerns
Beginnings for Parents of Children who are Hard of Hearing
beginningssvcs.com Help parents be informed, empowered, and competent so they can be knowledgeable decision makers
California Childcare Health Program
http://www.ucsfchildcarehealth.org
Support in achieving healthy and safe practices in child care settings
Children’s Liver Alliance
www.livertx.org Provides link to CenterSpan support site for parents dealing with transplants
Children’s Disabilities Information
www.childrensdisabilities.info Resource guide for children’s disabilities. Information empowering parents of children with special needs
Chromosome Deletion Outreach
Chromodisorder.org/index. html
Support group for families dealing with children with chromosome concerns
Circle of Inclusion http://www.circleofinclusion.org
Offers demonstrations of and information about the effective practices of inclusive educational programs for children from birth through age 8
Contact Information www.seliger.com Provides grant writing services Family Internet Home Page
www.familyinternet.com Provides information on many areas for families and individuals in general
Our Kids www.our-kids.org Site dedicated to raising children with special needs
Parent News www.parent.net Provides facts, articles, movies, resources, and books
Parent’s Rights and Responsibilities
www.ldonline.org/Id_indepth/parenting/parentrights.html
Parent Brochure – Rights and Responsibilities of parents of children with disabilities
Parents Place www.parentsplace.com Discusses pregnancy, health, family, work, and chat is available
Reference Circular Parents’ Guide to the Development of Preschool Children with Disabilities: Resources & Services
www.loc.gov/nls/reference/ circulars/parents.html
Wide range of information to assist in promoting the development of a child with disabilities from infancy to age 5. Listing of organizations, producers, and distributors who offer materials or services, also a listing of books
Special Child Magazine www.specialchild.com/ index.html
Online publication dedicated to parents of children with special needs
Support for Families of Children with Disabilities
http://www.supportforfamilies.org
Offer information, education, and parent-to-parent support
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Sibling Relationships Children with Disabilities: Understanding Sibling Issues (NICHY)
Ldonline.org Go to search and type in “siblings”
Article on sibling issues
Kids N' Sibs www.ggw.org/freenet/k/kns/index.html
Provides an online newsletter for siblings of children with disabilities, off-line newsletter also available
The Sibling Support Project
www.thearc.org/siblingsupport/index.htm
Provides general information for siblings of all ages of children with special needs, resources, education, information on sibshops
Technology
Alliance for Technology Access
www.ataccess.org Provides information on assistive technology centers, books, facts, and vendors
Applied Science and Engineering Labs
www.asel.udel.edu
Gives information on terms, devices, and types of equipment, also links to other resources
Assistive Technology devices and Services
interact.uoregon.edu/wrrc/ IDEAATech.html
Information on IDEA amendments affecting assistive technology
Center for Computer Assistance to the Disabled
www.c-cad.org Provides information on the organization and topics on computer assistance, information, referral, and links available
Delaware Assistive Technology Initiative (DATI)
www.asel.udel.edu/dati Discusses assistive technology help for people and children in Delaware, newsletter available
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Adaptive Toys AdaptiveMall.com www.adaptivemall.com Assistive technology and adaptive
devices at discount for children and youth with disabilities; full line of toys and games as well as many other categories of assistive devices
Family Village – Adaptive Toys
www.familyvillage.wisc.edu/at/adaptive-toys.html#info
Provides a listing of resources and vendors surrounding adaptive toys
Kaplan www.kaplanco.com Building activities, game boards, balloon kits, balls, etc. Four categories to choose catalogs from: exceptional children, early childhood, outdoor classroom, and math, science, technology & more
TFH (USA) LTD www.tfhusa.com Line of unique, adapted toys and products for children and adults with special needs
The Dragonfly Toy Company
www.dragonflytoys.com For children with special play needs; online catalog and tips
Adaptive Clothing Ability Apparel www.ableapparel.com Adaptive clothing to meet the special
needs of children Special Clothes, Inc. www.special-clothes.com Adaptive clothing for children with
disabilities, helping boys and girls with special needs meet the world with pride and confidence
Stitches from the Heart www.stitchesfromtheheart.com/home.html
Specializes in adaptive clothing for children with disabilities.
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Adaptive Equipment Enabling Devices www.enablingdevices.com Exceptional Products for Exceptional
People Flaghouse FlagHouse.com Provides a one-stop shopping experience Haverich www.haverich.com Wide variety of Orthopaedic Cycles Mealtimes www.new-vis.com A resource for oral-motor, feeding, and
mealtime programs
Activities Alternative Leisure Company
www.alctrips.com Provides information about trips and camps for children with disabilities
Special Olympics www.specialolympics.org Program of sports training and competition for individuals with mental retardation
The American Camping Association
www.acacamps.org Provides a way to search the country for camps according to need
Entertainment Disability Center www.disabilitycentral.com
Click on Active Teen DC Active teen is managed by and for teens with disabilities. We are an online cyber community where we can socialize, educate one another and just have fun together.
Lycoszone Lycoszone.Lycos.com
Light-hearted website that focuses on youngsters and teens.
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National Disability Organizations Association of University Centers on Disabilities
www.aucd.org Provides information about organizations for people with disabilities, legislation, special projects, resources, membership, and links
American Association on Mental Retardation
www.aamr.org Provides information on careers, publications, conferences, etc.
American Society for Deaf Children
www.deafchildren.org Providing a link between those with experiences to share and people seeking answers; services, resources, and links
American Speech-Language-Hearing Association
www.asha.org Provides information for professionals, students, and consumers
ARC of the US www.thearc.org National organization of and for people with mental retardation and related disabilities and their families; resources, publications, FAQ’s, and links
Association of Birth Defect Children, Inc.
www.birthdefects.org National clearinghouse to provide parents and professionals with information about birth defects and services for children with disabilities
Council for Exceptional Children
www.cec.sped.org Provides information about membership, legislation, publications, etc.
Federation of Families for Children's Mental Health
www.ffcmh.org National parent-run organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families
National Academy for Child Development
www.nacd.org International organization of parents and professionals dedicated to helping children and adults reach their full potential. Articles, research, resources, products, and programs
National Alliance for the Mentally Ill
www.nami.org Leading advocacy organization dedicated to improving the lives of persons with severe mental illnesses and severe anxiety disorders
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National Association for the Education of Young Children (NAEYC)
www.naeyc.org Nation's largest organization of early childhood professionals and others dedicated to improving the quality of early childhood education programs for children birth through age eight
National Council on Disability
www.ncd.gov Independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities
National Cystic Fibrosis Foundation
www.cff.org Resource of information on Cystic Fibrosis; research, facts, publications, and news
National Early Childhood Technical Assistance System
www.nectas.unc.edu National Technical Consortium working to support states, jurisdictions, and others to improve services and results for young children with disabilities and their families
National Easter Seal Society
www.seals.org Non-profit, community-based health agency dedicated to helping children and adults with disabilities attain greater independence
National Health Information Center
www.health.gov/nhic Health information referral service
National Information Center for Child and Youth with Disabilities(NICHCY)
www.nichcy.org National information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals, available in Spanish
National Institute of Mental Health
www.nimh.nih.gov Mental health research organization; valuable information on specific mental disorders, diagnosis, and treatment (also in Spanish)
National Institute on Disability & Rehabilitation Research
www.ed.gov/about/offices/list/osers/nidrr/index.html
Provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities
National Mental Health Association
www.nmha.org Dedicated to improving the mental health of all individuals and achieving victory over mental illnesses
National Federation of the Blind
www.nfb.org Organization of parents and friends of blind children reaching out to each other to give vital support, encouragement, and information
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National Organization on Disability
www.nod.org Only National disability organization concerned with all disabilities, all age groups, and all disability issues
National Parent Network on Disabilities
www.npnd.org Provide a presence and national voice for ALL families of children, youth and adults with disabilities
National Transition Alliance for Youth with Disabilities (NTA)
www.dssc.org/nta/html/ index_2.htm
Promotes the transition of youth with disabilities toward desired post-school experiences, including gainful employment, post-secondary education and training, and independent living
Office of Special Education & Rehabilitation Services (OSERS)
www.ed.gov/about/offices/list/osers/osep/index.html
Supports programs that assist in educating children with special needs, provides for the rehabilitation of youth and adults with disabilities, and supports research to improve the lives of individuals with disabilities
Office of Special Education Programs (OSEP)
www.ed.gov/offices/OSERS/OSEP/index.html
Their mission and organization focus is on the free appropriate public education of children and youth with disabilities from birth through age 21
Research & Training Center on Family Support & Child Mental Health
www.rtc.pdx.edu Activities focus on improving services to families whose children have mental, emotional or behavioral disorders through a set of related research and training programs
General Disability Sites Cornucopia of Disability Information (CODI)
http://codi.buffalo.edu Information on disabilities including statistics, directories, databases, etc.
Internet Resources for Special Children
www.irsc.org Provides links to the internet about disability areas
Institute for Child Health Policy
www.ichp.edu Monthly electronic newsletter on Maternal Child Health Community
The ARC's Q&A on Respite Care
www.thearc.org/faqs/respite.html
Information on respite care
The Family Village www.familyvillage.wisc.edu/ index.html
Global community that integrates information, resources, and communication opportunities on the Internet for persons with disabilities, their families, and those who provide them service and support
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The JP Das Developmental Disabilities Centre
www.quasar.ualberta.ca/ddc/INDEX.html
Containing valuable information and resources in five major areas: inclusive education, violence & disability, developmental disabilities, human ethics, and links by categories; for parents of children with developmental disabilities
Zero to Three: National Center for Infants, Toddlers, & Families
www.zerotothree.org Goal is to strengthen and support families, practitioners, and communities to promote the healthy development of babies and toddlers; links and resources
Specific Disability Sites:
ADD/ADHD A.D.D www.cpgs.com/add Treatment and Research Center A.D.D. Clinic www.addclinic.com Diagnosis and treatment of
Attention Deficit Disorder ADD (C.H.A.D.D.)
www.chadd.org Works to improve the lives of those with ADD/ADHD through education, support, and advocacy
ADD/ADHD
www.sinbad.net/business/adds Important information regarding the side effects of common medications
ADD/ADHD support group
www.adders.org Online support group, also provides news, information, research, resources, and links
Feingold Association of the United States (FAUS)
www.feingold.org Dedicated to increasing awareness of the connection between diet and the symptoms of ADD, ADHD, and learning disabilities
National Attention Deficit Association (ADDA)
www.add.org Organization that seeks to help people with ADD lead happier, more successful lives through education, research, and public advocacy
Ritalin, ADHD, and Diagnosing Children
www.breggin.com/ritalin.html Articles through the Center of Psychiatry and Psychology
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Autism AACAP
www.aacap.org/publications/ factsfam/autistic.htm
Article on children with autism
Autism Network for Dietary Intervention
www.autismndi.com Providing help and support for families using a Gluten & Casein Free Diet in the treatment of autism and related developmental disabilities
Autism Resources
www.vaporia.com/autism Information and index of links regarding the developmental disabilities autism and Asperger's Syndrome
Autism Resources in the U.S.A.
www.autism-info.com Site providing information on national organizations, resources, and research throughout the United States. Selection of state can be made
Autism Society of America
www.autism-society.org Mission is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education, and research related to autism
Autism Videos www.autism.com/cont_ed_prog Provides information on videos for sale
Autism-PDD (Pervasive Developmental Disorder) Network
autism-pdd.net
Information guide dedicated to autism spectrum disorders
Center for Study of Autism (CFA)
www.autism.org The Center provides information about autism to parents and professionals, and conducts research on the efficacy of various therapeutic interventions. Much research is in collaboration with the Autism Research Institute in San Diego, California.
Community Services for Autistic Adults & Children (CSAAC)
www.csaac.org Private, non-profit organization that offers services to individuals with autism
Cure Autism Now (CAN) canfoundation.org Dedicated to promoting and funding research with direct clinical application for treatment of autism
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FEAT
www.feator.org Families for Early Autism Treatment of Oregon providing resources, links, newsletter, and parent guide
Future Horizons
www.futurehorizons-autism.com
Provides information on videos, books, publications, and conferences; links and newsletter
Other sites www.autism.org/links.html
List of internet resources and links concerning autism
TEACCH www.teacch.com
Treatment and education of autistic and related communication handicapped children
The Autism Channel www.autismchannel.net Provides chat, information, and support to parents with children with autism or related disorders
The Autism Society of Delaware
www.wserv.com/delautism Families and friends of individuals with autism providing education, advocacy, and public awareness throughout Delaware
Asperger’s Syndrome ASPEN – Asperger Syndrome Education Network, Inc.
www.aspennj.org Education about issues, support, and advocacy
Asperger’s Syndrome Collation of the US
www.asperger.org Provides support and information to parents of children with Asperger’s and related disorders
Asperger’s Syndrome www.wpi.edu/~trek/aspergers.html
Information about the disorder, internet resources and support networks, and reading lists
Asperger’s Syndrome www.autism-society.org go to search and type in “asperger’s syndrome”
Answers to frequently asked questions, resource list
OASIS www.udel.edu/bkirby/ asperger
On-line Asperger’s syndrome Information and Support
Welcome to A.S.P.I.E. Asperger’s Syndrome Parent Information Environment
www.aspie.com Provide support and information, share personal experiences
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Bone Disorders Fibrous Dysplasia www.methodisthealth.com/
use search engine “A to Z” Information about the disease
Osteogenesis Imperfecta www.healthlinkusa.com/ 231.html
Links to websites which may include treatment, cures, diagnosis, prevention, support groups, risk factors, research, and more
Osteogenesis Imperfecta Foundation
www.oif.org General information, links, and support; Free subscription to newsletter
Brain Injury
Brain Injury Association, Inc.
www.biausa.org Comprehensive web site for persons with brain injury and their families; state offices, resources in various media, treatment and rehabilitation, National Directory
Brain Injury Association of Kentucky
www.braincenter.org An information gateway regarding acquired brain injury
Brain Injury Guide members.aol.com/bigkate4/ big.htm
Personal page providing information, story, and links
Brain Injury Information Network
tbinet.org Statistics, coma information, email support groups, resources and links
Brain-Net www.btinternet.com/~brain. net/
International Consultancy in child development; U.K. site about brain injury available in English, Dutch, and Italian
Coma Waiting Place www.waiting.com Directed to those who are waiting while someone is in a coma, information about brain injury, resources, and support
The Perspectives Network (TPN)
www.tbi.org Focuses to communicate public awareness and knowledge of acquired brain injury
Traumatic Brain Injury Model Systems
www.tbindc.org Links to publications, a database, news, the center for outcomes measurement, and other areas
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Cerebral Palsy
CP: Resource Center www.twinenterprises.com Provides answers to FAQ’s, a book list, and resources
Cerebral Palsy www.comeunity.com In children: articles and resources for parents
How Can I Help? www.iinet.com.au/~scarffam/cpa.html
Information for friends and relatives of a child with cerebral palsy
NICHCY- General Information about Cerebral Palsy
www.kidsource.com/NICHCY/cerebral_palsy.html
General information about Cerebral Palsy including definition, incidence, characteristics, educational implications; and a list of resources and organizations
United Cerebral Palsy Association (UCPA)
www.ucpa.org Seeks to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities
Cleft Lip & Palate Cleft Lip and Palate Surgery
www.plasticsurgery.org/publiceducation/procedures/index
Plastic surgery information
Cleft Lip an Palate Association
www.clapa.com Provides articles, education, support and feeding tips
Cleft Lip Palate Foundation
www.cleftline.org Education, news, support, health care for cleft palate. Website also in Spanish
Cleft Lip/Cleft Palate: Internet Resources
www.samizdat.com/#cleft List of articles with links
International Institute for Birth Defects
www.cleft.net/info
Information, support, research, and prevention on Cleft Lip/Palate
Kid’s Health/Cleft Lip and Palate
http://kidshealth.org/parent/medical/ears/cleft_lip_palate.html
Articles addressing treatment, dental care and available therapy.
Wide Smiles
www.widesmiles.org Support, inspiration, information, and networking for families dealing with the challenges associated with clefting
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Cystic Fibrosis
CF.com www.cysticfibrosis.com Provides support, resources, and information
Cystic Fibrosis – Doctor’s Guide to the Internet
www.pslgroup.com/CF.htm The latest medical news and information for patients or friends/parents of patients diagnosed with Cystic Fibrosis and related disorders
Cystic Fibrosis Care www.cfcare.com Provides people with cystic fibrosis, family members, and the CF community with quick and easy access to education, information, and breaking stories on the latest treatments and issues
Cystic Fibrosis Foundation
www.cff.org Resource of information
Cystic Fibrosis Research, Inc.
www.cfri.org Information on research in the field
Cystic Fibrosis Web Links
www.people.virginia.edu/~rh9u/cflinks.html
Cystic Fibrosis Weblinks to information
Family Guide to Cystic Fibrosis Genetic Testing
www.phd.msu.edu/DNA/cf_fam.pdf
Basic information for families
Deaf/Blind American Association of the Deaf-Blind
www.tr.wou.edu/dblink/aadb.htm
National consumer advocacy organization for people who have combined hearing and vision impairments
Boys Town National Research Hospital-Center for Hearing Loss in Children
www.babyhearing.org
Deaf/Blind Online www.ssco.esu.k12.oh.us/dblinks.html
Provides technical assistance to families, educational personnel, and other service providers through training efforts and the dissemination of information on innovative approaches to educating children and youth with dual-sensory impairments
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Helen Keller National Center for Deaf/Blind Youth
www.helenkeller.org/national Provides state resources, links, and publications
National Information Clearinghouse on Children who are Deaf/Blind
www.tr.wou.edu/dblink Provides links, state resources, databases, and publications
National Technical Assistance Consortium for Deaf/Blind
www.tr.wou.edu/ntac Provides statistics and workshop information
Down Syndrome Assoc. for Children with Down Syndrome(ACDS)
www.acds.org Provides facts, support, and resources
Breastfeeding a Child with Down Syndrome
www.breastfeeding.asn.au/bfinfo/down.html
Information on this subject
Facts on Breastfeeding And Down Syndrome
http://www.lalecheleague.org/FAQ/down.html
Topics of interest to parents of breastfed children with down syndrome
Diagnosis Down Syndrome
Leeworks.net/DDS Personal site with stories dedicated to parents
Down Syndrome Health Issues
www.ds-health.com Provides essays about children with down syndrome for other parents written by a pediatrician and father
Down Syndrome Online Advocacy Group
www.dsoag.com Scientific and educational effort aimed at utilizing the communication power of the Internet to increase public understanding and support for clinical and biomedical research into Down syndrome
Down Syndrome WWW page
nas.com/downsyn English, Spanish, and French speaking site that provides articles, essays, snapshots, links, information, and resources
Down Syndrome-A Parents Resource
www3.sympatico.ca/terry. edwards/Shelby.html
Parent site with personal stories, photos, and resources
DownsCity www.downscity.com Provides a directory, mailing lists, resources, and links
DownsNet www.downsnet.org Contains information on research, a library, and services on Down Syndrome
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Growth Charts for Children with Down Syndrome
www.growthcharts.com/ charts/DS/charts.htm
Growth charts for children with Down Syndrome
National Association of Down Syndrome
www.nads.org Not-for-profit organization providing information and understanding
National Down Syndrome Congress
www.ndsccenter.org/ National advocacy group that provides leadership in all areas related to persons with down syndrome
National Down Syndrome Education and Research Institute
www.downsyndrome.com Instructional videos available and links
National Down Syndrome Society
www.ndss.org Assists families in addressing needs of children born with down syndrome and sponsors and encourages scientific research
Recommended Down Syndrome Sites
www.ds-health.com/ ds_sites.htm#natl
Links to internet sites
Down Syndrome on the Internet
www.Downsyndrome.com Includes government resources, educational resources, medical information and resources, support groups, newsletters, and valuable links
The Lighter Side of Down Syndrome
www.geocities.com/Heartland/Hills/3153/dsmain.html
Personal site with stories and resources
UPSIDE www.telebyte.net/upside/ upside.html
Informal society of individuals, parents, and friends
Dwarfism
Dwarfism.org www.dwarfism.org Centralized dwarfism resources Human Growth Foundation
www.hgfound.org Helps individuals with growth related disabilities, their families, and health care professionals by providing education, research, and advocacy
Little People of America www.lpaonline.org Provides support and information to people of short stature and their families. Resources, data, and links
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Fetal Alcohol Syndrome Alcohol Related Birth Injury – Fetal Alcohol Syndrome
www.arbi.org Offers educational research and legal resources for the prevention and treatment of alcohol-related birth injuries
Fetal Alcohol Syndrome www.come-over.to/FAS Provides a wide range of information including resources and links
Fetal Alcohol Syndrome Family Resource Institute – FAS
www.fetalalcohol.syndrome.org Non Profit Organization offers support groups, prevention programs, and information about this condition. Membership details included
National Organization on Fetal Alcohol Syndrome
www.nofas.org General information of FAS
Fragile X FRAXA Research Foundation
www.fraxa.org Provides current information and links
National Fragile X Foundation
www.nfxf.org Gives general information, resources for families, and links
Genetic Disorders and Birth Defects Association of Birth Defect Children, Inc (ABDC)
www.birthdefects.org Provides free phone information, written materials, special reports and newsletters to parents and professionals
March of Dimes Birth Defect Foundation
www.marchofdimes.org Organization that focuses on the birth of healthy babies
The Genetic Alliance www.geneticalliance.org Find a support group, useful resources, newsletters, and publications
The Teratology Society www.teratology.org Site that provides information on birth defects, research, and prevention
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Hearing Impairments
Alexander Graham Bell Assoc. for the Deaf
www.agbell.org Nonprofit membership organization that was established in 1890 to empower persons who are hearing impaired; information, provider & support network
American Speech-Language-Hearing Association (ASHA)
www.asha.org Promote interests of and provide the highest quality services for professionals in audiology, speech-language pathology, and speech and hearing science, and to advocate for people with communication disabilities
Captioned Films/Videos Program
www.cfv.org Provides open-captioned films and videos, free for loan, for deaf and hard-of –hearing persons, teachers, organizations, and parents
Closed Captioning Web www.captions.org Information on closed captioning services, law and links
Hand Speak: A sign language dictionary online
www.handspeak.com Visual language dictionary online.
I See What You Say www.lipreading.com Concerned with speech-reading skills, video with manual available
National Association of the Deaf
www.nad.org Safeguards the accessibility and civil rights of 28 million deaf and hard of hearing Americans in a variety of areas
National Institute on Deaf & other Communication Disorders (NIDCD)
www.nih.gov go to search and type in “NIDCD”
Mission is to uncover new knowledge that will lead to better health for everyone-Provides information on current research
Phonic Ear www.phonicear.com Leading developer and manufacturer of assistive listening devices, products, tools, and links
The Deaf Resource Library
www.deaflibrary.org Collection of reference material and links to educate and inform people about deaf cultures in Japan and the U.S.
Where do we go from Hear?
www.gohear.org/index.html Provides information for families of infants and children diagnosed with hearing loss and professionals who work with these individuals
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Hydrocephalus & Spina Bifida
Children with Spina Bifida
http://www.waisman.wisc.edu/~rowley/sb-kids/index.html
Resource page for parents and professionals
Hydrocephalus Association
www.HydroAssoc.org Provides support, education, resources, and advocacy
Hydrocephalus Center www.patientcenters.com Provides articles and resources Spina Bifida Association of America
www.sbaa.org Provides toll free information & referral services, newsletter, publications, and links
The Hydrocephalus Foundation, Inc. (HyFI)
www.hydrocephalus.org Dedicated to providing support, resources, and networking opportunities
Hyperlexia American Hyperlexia Association Home Page
www.hyperlexia.org Provides basic information and links
Hyperlexia and Language Disorders
www.geocities.com/ HotSprings/9402/
Provides articles and links
Hyperlexia Parents Page Westwingpublishing.com/ hyperlexia
Information for parents with personal stories, articles, and chat available
Juvenile Diabetes Juvenile Diabetes Foundation International – The Diabetes Research Foundation
www.jdf.org Research, publications, chapters, and advocacy
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
www.niddk.nih.gov Information on health, programs, research, and FAQ’s
Diabetic Gourmet http://diabeticgourmet.com/Healthy_Living/Juvenile_Diabetes/
Provides parents of children with juvenile diabetes articles, resources, news and recipes
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Language/Speech Disorders American Speech-Language-Hearing-Association (ASHA)
www.asha.org Promotes interest of services for professionals and people advocating for people with communication disorders
Apraxia Kids www.apraxia-kids.org/index.html
Provides information and how apraxia affects families and children, links and support groups
Born Learning http://www.bornlearning.org/ Supports families with children who are late talkers
Children Learning Language-How Adults Can Help
http://www.childdevmedia.com/highlight2.cfm?product_id=411
In this video Naomi Baron guides viewers along a child's journey from babbling to complex sentences
Enhancing Communication Skills Through Reactive Language Strategies
http://www.childdevmedia.com/highlight2.cfm?product_id=369
Video provides the viewer with strategies that can be used to help children improve their communication skills
Hanen Resources http://www.childdevmedia.com/highlight2.cfm?product_id=370
Committed to helping children communicate to the best of their abilities and to providing parents, caregivers and teachers with knowledge and support to make this a reality
KidsEars www.kidsears.com/kidspeak.html
Provides listing of milestones and suggestions
Kidsource Online: Spoken Language Problems
www.kidsource.com/LDA/ spoken_language.html
Basic explanation of oral language disorders
Language is Key http://www.wri-edu.org/bookplay/
Educational program that shows parents and teachers how to promote children's language development during the preschool years. Program includes the following components: Talking and Books (VHS 20+ minutes), Talking and Play (VHS 20+ minutes), Resource Guide with handouts
Learning to Communicate: The First Three Years
http://www.childdevmedia.com/highlight2.cfm?product_id=398
Videotape illustrates the milestones of normal communication development in the first three years of life
Making the Most of Early Communication
http://www.childdevmedia.com/highlight2.cfm?product_id=406
Video emphasizes the importance of making use of the child's available senses, using familiar routines and turn taking games, and using systematic and direct instruction for encouraging communication
Medline Plus www.nlm.nih.gov/medlineplus/ Promotes public education, research,
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aphasia.html rehabilitation and support services to assist families
National Institution of Deafness and Other Communications Disorders
http://www.nidcd.nih.gov/ Provides facts, research, resources, news and events related to communication disorders
Parents as Teaching Partners
http://www.edact.com/product.cfm?c_id=82&p_id=529&path=-1,1,82
easy-to-do, low-cost activities that teachers can suggest to parents
Speech and Language Delays: What Do They Mean for Your Child?
http://www.childdevmedia.com/highlight2.cfm?product_id=399
Videotape briefly outlines the development of communication skills in the first three years of life
Speech and Language Disorder
www.mankato.msus.edu/dept/comdis/kuster2/splang.html
Provides listing of sites related to speech and language disorders
Successful Language Development Strategies in the Early Childhood Classroom
http://www.edact.com/product.cfm?p_id=528&path=-1
For English Language Learners and Native Speakers-successful language development techniques
Talking Together: The Movie
http://www.childdevmedia.com/highlight2.cfm?product_id=368
Video demonstrates how to focus on and take advantage of the natural uses of language
Learning Disabilities Essential Learning Institute
www.ldhope.com Information on LD with audio introduction option
LD Online www.ldonline.org/index.html Interactive guide to learning disabilities for parents, teachers, and children
Learning Disabilities Association of America
www.ldanatl.org Dedicated to enhancing quality of life, alleviating restricting effects, and supporting endeavors to determine causes of learning disabilities
Learning Disabilities Clinic
www.slam.nhs.uk/services/pages/detail.asp?id=417
Private educational treatment facility for children, adolescents, and adults, dedicated to helping individuals achieve their full learning potential.
National Center for Learning Disabilities
www.ncld.org Provides information, resources, referral services, public awareness, advocacy and more
Special Kids www.specialkids1.com Reaching and teaching kids with disabilities through videos, CD-Roms, and picture books
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The Learning Center learningcenteronline.com
Information about testing and enrichment, Educational and counseling services to children and adults
Leukodystrophy
United Leukodystrophy Foundation
www.ulf.org Dedicated to providing patients and their families with information and support, increasing public awareness, and promoting and supporting research
Lowe Syndrome Lowe Syndrome Association
www.lowesyndrome.org Basic information and links
Mental Retardation
American Association on Mental Retardation
www.aamr.org Promotes global development and dissemination of progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities
Best Buddies www.bestbuddies.org A nonprofit organization dedicated to enhancing the lives of people with mental retardation by providing opportunities for socialization and employment
National Center for Birth Defects and Developmental Disabilities
www.cdc.gov/ncbddd/dd/ddmr.htm
Answers the question what is mental retardation?
The ARC www.thearc.org Organization committed to the welfare of all children and adults with mental retardation and their families
Muscular Dystrophy Muscular Dystrophy Association
www.mdausa.org Information on research, services, publications, and clinics
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Muscular Dystrophy Family Foundation
www.mdff.org Provides services, resources, home medical equipment and adaptive devices to help people with muscular dystrophy and their family members live independent and productive lives
Muscular Dystrophy Parent Project
www.parentprojectmd.org/ Provides a network of communications, support for parents and children, and information on the disease, treatment, care, and conferences
Paralysis and Spinal Cord Injury
American Paralysis Association
www.apacure.com Information on news, research, publications, discussion, and events related to spinal cord injury and paralysis
National Spinal Cord Injury Association
www.spinalcord.org Improving care, producing results in research, and addressing everyday living issues that confront all people in wheelchairs
Spinal Cord Injury Resources
www.makoa.org/sci.htm Links containing general resources, newsletters, articles, and fact sheets
WheelWeb.Com: The Spinal Cord Injury Resource
www.wheelweb.com Purpose is to educate people about SCI and advance the lives of those who have it
Prader-Willi Syndrome
GeneClinics www.geneclinics.org/profiles/ pws
Basic information on the disorder
PedBase- Doctor’s Guide www.pslgroup.com/dg/200c2.htm
Basic information on the disorder
Prader-Willi Syndrome Association
www.pwsausa.org Information on organizations, FAQ’s, research, brochures, and support
34
Rare Disorders National Organiation for Rare Disorders(NORD)
www.rarediseases.org Committed to the identification, treatment, and cure of rear disorders through programs of education, advocacy, research, and service; newsletter, and search databases
Genetic/Rare Conditions Support Groups & Information Site
www.kumc.edu/gec/support/ groups.html
Allows for a search of support groups according to disability; information on genetic conditions or birth defects for professionals, educators, and individuals
Rare Genetic Diseases www.familyvillage.wise.edu/lib_gene.htm
Who to contact, make connections with other families, and related websites
Rett Syndrome International Rett Syndrome Association (IRSA)
www.rettsyndrome.org Purpose is to support and encourage medical research, determine the cause and find a cure for Rett syndrome, to increase public awareness, and to provide informational and emotional support to families; available in French, Dutch, Italian, Portuguese, and Spanish
Seizure Disorders
American Epilepsy Society
www.aesnet.org Promotes research and education for professionals dedicated to the prevention, cure, and treatment of epilepsy
Lycoszone Lycoszone.Lycos.com Go to search and type in “epilepsy”
Light-hearted website that focuses on epilepsy and seizure disorders for youngsters and teens.
Epilepsia www.epilpsia.com Official journal of The International League Against Epilepsy (on-line journal)
Epilepsy Contact Database
www.datasync.com/~josw/ epilepsy.htm
A database of families and bookstore developed to unite and educate those affected by and afflicted by epiliepsy
Epilepsy Foundation of America
www.efa.org Provides information on advocacy, services, publications, research, etc.
35
Epilepsy International www.epilepsy_international.com/
Provides a large, comprehensive and well-designed educational and informational resource for those working with and/or dealing with epilepsy on a day-to-day basis in English and Spanish language
Parent Site Kisepilepsy.com Support platform for parents and other caregivers of children
The Epicenter http://137.172.248.46/epilepsy.htm
Provides basic information and answers FAQ’s
Spinal Muscular Atrophy Families of Spinal Muscular Atrophy
www.fsma.org Provides information, resources, research articles, membership information, photos, and links
Spinal Muscular Atrophy www.mda.org.au/specific/mdasma.html
Fact sheet on spinal muscular atrophy
Tourette Syndrome
The Facts about Tourette Syndrome
Members.tripod.com/ ~tourette13
A collection of general information, FAQ’s, causes, related problems, and links
Guide to the Diagnosis & Treatment of Tourette Syndrome
www.mentalhealth.com/book/p40-gtor.html
Booklet intended to provide information to professionals who wish to become more knowledgeable about Tourette Syndrome
National Tourette Syndrome Association
www.tsa-usa.org National organization dedicated to providing up-to-date, accurate information about Tourette Syndrome
TS "Plus" www.tourettesyndrome.net Current research and information on TS, its treatment, and educational issues. Files for parents, educators, and health care professionals to download
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Tuberous Sclerosis Global TS Information Link (GTSIL)
www.edae.gr/tuberous.html Provides information about TS and the organization with a bookstore, newsletter, and links
National Tuberous Sclerosis Association
www.tsalliance.org Provides information about TS, the organization and gives resources and parent support
National Tuberous Sclerosis Association- Brochure- My child has Tuberous Sclerosis
www.tsalliance.org/publications/52810_NTSA.pdf
Brochure providing families of children with TS information, education and support
Vision Impairments American Council of the Blind
www.acb.org Provides general information about the Council, including recent issues of the monthly publication, The Braille Forum
American Foundation for the Blind
www.afb.org National resource for people who are blind or visually impaired, and the organizations that serve them; information, newsletters, events, on-line journal
Art Through Touch Members.aol.com/ATTouch Organization that provides tuition and a range of high quality art activities for blind and visually impaired people
Blind Children's Learning Center
www.blindkids.org Center that seeks to develop the full potential of children and youth with a visual impairment, in the greater Orange County community, regardless of ability to pay
Blindness Resource Center (NYISE)
www.nyise.org/blind.htm Provides information on resources for the blind
EyeNet - American Academy Of Ophthalmology
www.aao.org Public information, resource guide, and on-line education center
Microphthalmia, Anophthalmia and other Eye Disorders
www.angelfire.com/mi/ microphthalmia
Designed to bring families together to share personal stories and experiences, links available
National Association for Visually Handicapped
www.navh.org Provides a merchandise store, links, resources, excerpts library, and mailing list
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National Federation of the Blind
www.nfb.org Comprehensive consumer and advocacy organization that provides public education, information and referrals
Visual Impairment Guide www.viguide.com Guide to internet resources about visual impairments for parents and teachers
Williams Syndrome Williams Syndrome Association
www.williams-syndrome.org Provides information on the disorder, medical guidelines, resource libraries, and internet links
Williams Syndrome Foundation
www.wsf.org Provides basic information, personal stories and photos, information on organizations, and contact with families
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Updated and revised By Connie Luciani
Summer 2001
Updated and revised By Sara Buffone
Fall 2003
Prepared by Amie Melnychuk for the Birth to Three Early
Intervention System Spring 1999
Updated and revised By Kathleen Lavery
Spring 2000